Exploration of Consent Issues in Deceased Organ Donation

Abstract

Background It has been proposed that barriers related to consent for deceased organ donation and organ donation research have stymied efforts to advance outcomes. This thesis explores these two related, but different contexts of consent with the aim of elucidating potential impact on the organ donation and transplantation system. Objectives 1. Assess knowledge and attitudes towards opt-out consent in deceased organ donation. 2. Assess the impact of opt-out consent on deceased organ donation. 3. Describe transplant recipients’ views on organ donor research and their role in consent to this research. Methods Study 1: Meta-synthesis systematic review assessing knowledge and attitudes towards the opt-out model of consent in deceased organ donation. Study 2: A systematic review assessing the effect of the opt-out model of consent in deceased organ donation on quantitative outcomes. Study 3: A qualitative interview study to elucidate views of transplant recipients on organ donor research and their role in research consent. Results Study 1: We found limited knowledge and support for opt-out consent. We identified important ethical considerations about opt-out consent among members of the public, including value for autonomy in decision-making and the right to informed consent. Study 2: We found a weak signal that countries with the opt-out model have higher consent to donation rates and higher organ donation rates. Study 3: Among solid organ transplant recipients, we found that while preferences varied related to the method and timing of providing consent for use of their own data, participants did not feel they had a role in research consent of a donor patient. Conclusions This thesis highlights that while opt-out consent may be associated with improved donation outcomes, public understanding and support for such policies remain limited. Findings from this thesis also challenge assumptions about transplant recipients’ roles in donor research.